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Not celiac, now what? (feeling hopeless)

Midna

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Midna Newbie
Midna
Posted

Hi, I'm new here. I just recently got tested for celiac and the test (biopsy) came back negative (I also tested for lactose about 10 years ago and did a histamine elimination-provocation diet, both also negative).

I'm just really at the end of my rope, the idea that I'm just going to have to learn and live with this is very depressing. My stomach hurts all day, I bloat up like I'm pregnant, have a lot of gas, ... but the thing that gets me most is I'm sooooo tired all the time. I really thought it was going to be celiac (it would explain every problem I have). 

Anyone have experience with other things causing the same kind of symptoms? 

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kareng Grand Master
kareng
Posted

You might want to google " FODMAPS".  Then read some reputable sites first  - like Mayo Clinic not some person calling themselves an expert.  You seem like a classic case.  Being mostly gluten free is part of that diet, but a few crumbs of gluten shouldn't hurt.  

SLLRunner Enthusiast
SLLRunner
Posted
49 minutes ago, Midna said:

Hi, I'm new here. I just recently got tested for celiac and the test (biopsy) came back negative (I also tested for lactose about 10 years ago and did a histamine elimination-provocation diet, both also negative).

I'm just really at the end of my rope, the idea that I'm just going to have to learn and live with this is very depressing. My stomach hurts all day, I bloat up like I'm pregnant, have a lot of gas, ... but the thing that gets me most is I'm sooooo tired all the time. I really thought it was going to be celiac (it would explain every problem I have). 

Anyone have experience with other things causing the same kind of symptoms? 

Hi Midna, welcome. You should not have to live with the symptoms you describe. Did the doctor do a full blood panel, including checking your vitamin levels and also look for other diseases that could be causing your symptoms? 

Were you eating gluten prior to the tests? If not, you can get false negatives.

Did they do blood tests for the celiac disease as well?

I am sure @cyclinglady will be able to offer some more detailed advice.

Midna Newbie
Midna
Posted
  • Author

Hi,

Yes, I've heard of FODMAP and may give that a try and it seems like something good to try now that I've read some more about it.

The doctor did a full blood panel, I had low vit D, vit B12 en Iron and taking supplements for those for 2 months or so now. They didn't mention anything else.

Yes, I was still eating gluten. My blood test wasn't readible as I am IgA deficiënt, that's why I did the biopsy.

Thanks for the replies

frieze Community Regular
frieze
Posted

how many samples/specimen did they take?  did they do the IgG variety of blood tests also?  if you don't mind, put up your blood test results, with normal ranges.

cyclinglady Grand Master
cyclinglady
Posted

Remember, the small intestine is roughly the size of a tennis court!  It is easy for the GI to miss damaged patches as they are not visible.  Did you get copies of the biopsy report?  How many samples and where were they taken?  

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Frieze is right.  You should confirm if the IgG versions of the the DPG and TTG were taken if you are IgA deficient.  

I am not a doctor, but I agree that it sounds like you have celiac disease.  Please do not give up!  

 

Midna Newbie
Midna
Posted
  • Author

I don't have the results with me but I do remember it had two different blood tests on the paper, I'm guessing one tested IgA and the other TTg. They were both really low (so not even close to what you would expect with celiac).

They took about 4 biopsies if I remember correctly. 

So everything would suggest I'm not celiac (which is a good thing). I've been reading up on FODMAP and I think I'm going to try that first, it would also give me an indication if I react badly to gluten (as you have to cut out most of it too). 

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Susan in MI Newbie
Susan in MI
Posted

I am sorry you are having issues.  I would encourage you to try a gluten-free diet for a while because it definitely takes time to heal your gut.  

I also used to have a lot of bloating and gas and excessive burping.  I went dairy free, dropped all artificial sweeteners (not that I had a lot, mainly in chewing gum), started taking probiotics (RAW brand) and digestive enzymes (Digestmore Ultra).  I got a lot of relief.  I eat a pretty clean diet anyway, but if you don't, I would encourage it.  Also, to try to solve some joint pain issues, I did the Whole 30 challenge in January and saw great results.  I would encourage you to look into that and red their book, "It All Starts with Food".  It explains a lot about how our bodies handle the food we eat.

Also, I just finished reading a book called "Tox-sick" by Suzanne Summers  and you would be astounded all our poor bodies go through with exposure to environmental toxins.  A lot of those toxins create symptoms that get passed off as all different types of problems, many of which are gut related.

I am currently reading "Pain Free in 6 Weeks" by Sherry Rogers and again, many problems we have are caused by foods we eat and our environment.  

You might try a nightshade free (tomatoes, potatoes, eggplant and a few others) diet for a while and see if you can find the cause of your troubles.

Best of luck!

Susan

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